Ella had a rough morning. Thankfully, it became better by late afternoon.

She woke up earlier than normal with gas pains and diarrhea. I’m not sure how long she had a soiled diaper because she also had a mild diaper rash. We cuddled for an hour or so until the pain subsided and then she went back to sleep until 10:15am or so.

That was a blessing in disguise because Kelly had a migraine. On average, she gets a migraine once per week. Yuck, I can’t relate. I think headaches or migraines have to be one of the worst things to endure. Although I have never had a migraine, so I feel blessed.

Based on them both feeling under the weather, it was a calm day for the Bun and Kelly. They cuddled a lot in the rocking chair.

We had our first session with the occupational therapist. We have homework for this next week. She asked us to start trying to play around her mouth, kiss her mouth, take various fabrics and wipe them across her mouth and lips. Also, we are to take her binky and dip it in apple juice to get her used to the flavor and taste. So far, both of these things are very challenging with Ella. She doesn’t like things near her mouth or making her try to drink beverages from her bottle, especially when she didn’t ask for it.

Ella had another good day.

It was a little rough because we had to return to the hospital. More labs and another weight. She melts down and despises the whole experience. And you really can’t blame her. She likes getting in the car and having the change of scenery. But once she realizes where we are and what we are doing, the meltdowns begin.

As of tonight, we are not sure what her labs look like. Hopefully, we will find out tomorrow. Regarding her weight, she lost more again. One week ago on discharge, she weighed 7.9 kilos (17.4 pounds). Today, she weighed 7.7 kilos (16.9 pounds). She has been tolerating the 24 kcal at a rate of 25ccs per hour (600ccs total volume of formula), but this is a significant amount less than what she was receiving the past few weeks.

Although I have not seen the labs, I decided to try and increase her rate to 27ccs per hour starting at 7pm tonight. This will give her 48ccs more formula in a 24 hour period. We’ll see if she tolerates the change overnight.

We had our first physical therapy appointment in our home today. The last one was in the beginning of August. Before that, it was several weeks prior since our physical therapist switched. Bottom line: the last time we were on a consistent schedule was Gainesville which was May 2008.

This physical therapist is willing to come to our home 4x per week. We’re excited about that because Ella has so much catching up to do. The session today was one of the best I have seen. Ella did great – – she was tolerating a lot and having a good time with stretching, kicking, grabbing. Kelly was able to watch and catch on to some techniques that she can use each day when handling Ella, things that will help Ella get stronger.

It was a great baseline session to measure her future progress and it provides an assessment of her overall clinical picture. When she is feeling good, she even tolerates and has fun with PT.

We did not receive the Farrell bags today, as promised. But we’re hoping that we get them tomorrow and that the increase in food volume will not cause too many problems. Our goal will be to get in touch with her pulmonary doctors tomorrow to review the labs and our current food & medicine strategy.

We’ve enjoyed the past few days with Ella feeling well. I know that there is no promise in her continuing to feel good as we adjust her feeds and medicine. But it is my hope and I cling to the truth that God is in control and choosing to use Ella’s little life in whatever way brings Him the most glory.

Thank you to all of you out there that check on our girl and pray for her – – you know who you are. It means so much to know that Ella’s smile can be shared and enjoyed by many who are looking to make the most of each day.

Psalm 40:8
I desire to do your will, O my God;
your law is within my heart.

Another good day for the Bun.

Tina and Kelly were up early to go to the opening of a Home Goods store, do some grocery shopping, and run some other errands. This left me alone to take care of our girl. Before they took off though, Tina snapped a few pictures of some visitors on our neighbors lawn.

Ella and I had a great time playing on her mat, cuddling, snuggling, and making each other smile. There were also a lot of funny faces and noises involved too. So great to have these times with my girl. I really try to soak them in, because I know her behaviors and times of feeling good tend to ebb and flow.

She handled her feeds well all day and she only needed to be vented once tonight.

Tina and Kelly didn’t get home ’till 6:30. About 30 minutes before they did, I had a bit of a scare with Ella. She was laying in her crib when she began to retch. I picked her up and she really seemed to be having trouble. I set her down real quick and ran over to the concentrator to increase her oxygen. I went back to pick her up and she couldn’t catch her breath.

While holding her, she arched back in a state of panic, but she couldn’t clear her airway. She was turning more blue, then she got real calm. She didn’t fully pass out but she looked dazed. Thoughts of CPR were racing through my head. She was breathing, but still struggling a bit. I was able to get her to drink which helped clear her out. It took her a few minutes for her color to return but it finally did. Man…these are not fun moments.

By the time Tina and Kelly got here, she was back to her smiley self, as if nothing happened. Glad to see it turn out this way…thanking God that it did.

Psalm 16:7-8 (New Living Translation)
I will bless the Lord who guides me;
even at night my heart instructs me.
I know the Lord is always with me.
I will not be shaken, for he is right beside me.

Thank you Lord for always being here with us…and thank you for our sweet child, Ella Renae.

Ella had a great day. She’s doing good on the 24cal food at a rate of 25ccs per hour. This has played a big part in her mood.

We tried feeding her some apples, but it didn’t go well. She’s definitely taken a step back in this area. There was a time when she’d open her mouth for more food, but now, she just melts down. It’s hard to see this backward progress, but Tina reminded me that we were here before, and she’ll come around again.

At this very moment, the Bun is asleep, and Tina, Kelly, and I are outside enjoying a mild October night in Colorado next to our fire pit.

I know there are many of you out there who don’t comment, but you do check us out almost every day. Thank you for keeping up with Ella’s progress and for all support.

Ella did better last night. I was still up several times, but she did not seem like she was having as many tummy issues.

I think that the volume and density of the food is helping. Although she still needs to be vented frequently, she does not push back a lot of food. This means that she is tolerating the volume well and that the volume of food is not causing too much pressure. Throughout the day, she is not fussy and complaining about a lot of pain. We think that the density of the food is not causing tummy discomfort – thank goodness!

We’re excited to try the Farrell bag solution. It will not arrive at our door until Monday. I’m really hoping that it provides Ella with a higher level of comfort and prevents us from having to vent constantly, especially overnight.

Ella acted more like herself today. Although, there are still some instances where she seems to not handle herself well. For example, she melts down when we change her diaper. She never used to do this, but since this recent hospitalization, she loses it. Or giving her a bath. She never loved them before but she would sit and tolerate it and sometimes flash me a smile if I made a silly face. Over the last few weeks, she simply loses it and melts down. So aside from the physical changes in Ella since surgery, she definitely acquired some not-so-favorable learned behaviors.

The plan is to keep her comfortable on a continuous feed of the 24 kcal formula over the weekend, at a rate of 35ccs. We’re hoping and praying for a restful night of sleep.

Psalm 27:14
Wait for the LORD;
be strong and take heart
and wait for the LORD.

Ella’s night was restless and she was not comfortable.

From midnight until 4am, she did not stir much. When she did and I ran into her room, I noticed that her food pump was not running (flow error). Ahh…that is why she has been so quiet the past few hours. As soon as I turned on the food, I was up every 30 minutes thereafter.

We had a visit from a nurse at our house today. We requested this service when we were in the hospital and insurance approved it. She will come once per week to assess Ella, weigh her, etc. Also, she will be able to administer shots. This will be great, especially for synagis shots this winter season.

The nurse was listening to me describe all of Ella’s feeding issues, and then she asked if we had tried a farrell bag. I had never heard of the term. Apparently, you can get a extension set that fits into Ella’s g-tube. At the top of the tube, there is a “Y” connection. The food bag connects to one side with a farrell bag attached to the other side. The farrell bag allows for venting while the food pump is feeding. It sounds good because air/gas is one of the biggest problems that we are having right now. Especially overnight, I am venting once every 30 mins – 1 hour. For those of you that do not realize, that is a lot of venting! Maybe this new set up will help Ella. Unfortunately, it will take a few days for it to arrive.

Ella was fussy most of the morning. She did not like the nurse visit (she weighed in at 7.88 kilos). Overall, she was feeling lots of discomfort from the 26 calorie food and therefore was simply unconsolable.

We got into the car to drive to the Children’s Hospital and Ella seemed relieved at the change of scenery and the fact that she was not eating! We went to get labs done. It took two sticks to get what we needed. Her BUN is 27. Much better. Going the right direction. She weighed in at 7.8 kilos on the pulmonary clinic scale. So, she has lost weight this week but I am not surprised considering how much less food she has received.

When we got back home, we made the EleSure with less concentration at 24 kcal and started her feeding continuously again at a rate of 25ccs/hour. She started to do really well. Kelly played with her and she was in a great mood, smiling and all. We haven’t seen this behavior in days. I think the food is a huge deal; less dense food is better for her these days. The wrong food can just make her really uncomfortable and extra fussy. We’ll see if the farrell bag solution will help her overall, especially when we try and move her towards a normal feeding schedule.

It was such a nice reprieve to see Ella feeling better this evening. We pray that she continues to heal and tolerate food.

Psalm 25:4-5
Show me your ways, O LORD,
teach me your paths;
guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.

The last 24 hours were tough.

Ella was up all night last night, literally every 30 mins or so. She would try and get comfortable, but wake up fussing and crying. I think it was tummy discomfort. We have not had a night this rough in about 2 weeks.

We went back and looked at the blog to see her progression of food on this new formula. Here is a snapshot:

Wed, Oct 1st: Care Conference. BUN of 9. Decided to try EleCare, started with 20 kcal, rate of 30ccs per hour continuous.
Thurs, Oct 2nd: Increased to 24 kcal, rate of 30ccs per hour continuous
Fri, Oct 3rd: Increased to 26 kcal, rate of 30ccs per hour continuous
Sat, Oct 4th: BUN of 34. Same schedule: 26 kcal, rate of 30ccs per hour continuous
Sun, Oct 5th: Same schedule: 26 kcal, rate of 30ccs per hour continuous
Mon, Oct 6th: BUN of 34. Increased to 27 kcal in the evening, rate of 30ccs per hour continuous
Tues, Oct 7th: Increased to 27 kcal at a rate of 31ccs per hour in the evening continuous
Wed, Oct 8th: BUN of 33. Increased to 28 kcal in the evening, rate of 31ccs per hour continuous
Thurs, Oct 9th: Increased to 28 kcal at a rate of 32ccs per hour in the evening continuous
Fri, Oct 10th: Same schedule: 28 kcal, rate of 32ccs per hour continuous
Sat, Oct 11th: Changed the daily feeding schedule: 45ccs over one hour, 60ccs over one hour, 75 ccs over one hour, 90ccs over one hour, 100 ccs over one hour. Continuous feed at 34ccs for 8 hours overnight. **Started to have challenges**
Sun, Oct 12th: Changed the daily feeding schedule: 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges** Started to behave in a way that you could tell she did not feel great.
Mon, Oct 13th: BUN was 37. Tried to feed 100 ccs over one hour, 5 times per day, but missed a bunch of food due to hospital discharge, continued to have food challenges overnight.
Tues, Oct 14th: Went back to 100 ccs over one hour, 5 times per day. Continuous feed at 32ccs for 8 hours overnight. **Continued to have challenges, especially overnight**
Wed, Oct 15th: From 9am -11am, used 28 kcal at a rate of 32ccs per hour, continuous. From 11am – 3pm, used 28 kcal at a rate of 25ccs per hour, continuous. From 3pm forward, used 26 kcal at a rate of 25ccs per hour, continuous.

So after consulting with Dr. Abman (pulmonologist) and Dr. Soden (GI) today, we ended up at trying 26kcal at a rate of 25ccs per hour, on a continuous feed. Also because we are reducing her volume of food so much, we are skipping her dose of diuretic this evening and her morning dose.

It stinks to have to take this many steps backwards. But we want to go easy on Ella with the food. If we cannot get her to tolerate the EleCare, then we have to look at placing a tube in her nose and by passing her tummy altogether for a time frame (NJ tube). That is not something we want to have to do, so we are more than willing to go slow.

I think it is just discouraging. She had her surgery on September 3rd and she is still having a hard time with tolerating food in her belly. We expected to have to vent her a lot because the nissen would be tight, but digesting food was not an expected problem.

It is hard when she can’t sleep at night, when she is retching a lot, clearly uncomfortable, and there is nothing you can do to make it better for her. It’s just a rough deal to endure.

We have a nursing visit tomorrow morning from a skilled nurse. She will come to our home to do an assessment, weigh her, etc. Eventually, this is the same nurse that will come to our home to administer Ella’s synagis shot. I’m so excited that insurance approved the nurse to visit our home for this purpose. With winter approaching, the less we have to take Ella out, the better.

Also, we have to go to the Children’s Hospital to weigh in and get labs done. Once we have that information, we will consult with pulmonology to see how they want to proceed with the food and diuretic balance. Thankfully, she is not having any respiratory issues, likely because she is too dry.

Please say a prayer for sweet Ella. She is having pain of some kind (we think it is the rate and density of the food). We pray that the doctors will be given wisdom on which food and combination of meds will be the best for her.

Also, pray for us. We miss our girl…tremendously.

We’re home but it has been tough.

Ella doesn’t feel great. You can just tell. It makes it seem like we should not have left the hospital. We were just was tired of being in the hospital setting and pushed to come home.

Last night, she seemed uncomfortable. We decided to skip her nightly dose of diuretic since a) she has been too dry and b) she missed a bunch of food during the day. This morning, she was still not acting like herself. We called the docs, explained what we did last night and how she was behaving. Without hesitation, they opted to not give her the morning dose of diuretic (Aldactazide). They asked us to monitor her closely and to resume our regular schedule of medicines tonight.

She’s just not acting like herself. We miss our girl so much – – the one that feels good and is playful with lots of smiles. We had a small taste of that last week for a few days. But our theory is that she became too dry and is now uncomfortable. For example, today we could get her to smile but it took lots of coaxing just to get anything.

Now, the docs want us to go to the Children’s Hospital and get labs on Thursday, plus get on the scale. I was hoping that would be a 1x/week situation, but Ella is just too fragile.

Please pray for strength for Ella’s body. Our hearts desire for Ella to be feeling good and more like herself.

Last night was rough for Ella. She was restless and up several times due to food discomfort. They changed the nightly food rate to 34ml/hour. Although it was only a 2ml increase per hour, it was too much for Ella.

The morning started out with labs. It is almost hard to believe, but her BUN came back at 37! That is the wrong direction and the most dry she has ever been. This portion of her labs caused a lot of discussion this morning as to whether or not she should be discharged. The expectation was that she would have gotten more wet with the increase in the volume of food over the past few days. Instead, she became even more dry. It made the docs question whether or not the “cocktail” was correct.

To be honest, I think they realize that the “cocktail” is not correct. Everyone agrees that a BUN of 37 is too high (normal range is 6-17). But although her numbers show that she is too dry, they all agree that she looks and behaves great. She is definitely more comfortable when she is running dry. It just becomes a question of whether or not she is too dry.

I feel like this process of refining her “cocktail” is a long term plan for management. Even if it was perfect this week, it does not ensure that it will be right in a week from now. We will always be adjusting her meds and food as each week passes. This process is long term.

As a compromise, we went to the pulmonary clinic and used their scale in B1 to weigh Ella. As we approached the pulmonary clinic, Ella saw her friend Megan (she works at the hospital and helped us move last week). Megan took us right back and gave us VIP treatment. Ella weighed in at 7.9 kilos.

Next Monday, we have to go to the Children’s Hospital to get labs done again. Along with that, we were asked to visit the pulmonary clinic scale again to see if Ella is showing any signs of weight gain. By agreeing to these 2 steps, they decided to let us come home with Ella this afternoon 🙂

Even on the way down to the pulmonary clinic for the weight, Ella got a huge smile on her face. She was simply excited to be out of her hospital room.

On the way home from the hospital, we had a scare. The staff did not let us know that 3 of Ella’s medicines are compounds (these are new meds for us) . Compound medicines can only be made at certain pharmacies and typically take more time. When we tried to work with 3 different Walgreens, we kept running into challenges. For example, they will not even fax prescriptions from one Walgreens store to another Walgreens store. Finally, we worked it out with a local, family-owned pharmacy at the last minute. They were nice enough to take a verbal order and asked that we fax it. Since I was in my car and did not easily have access to a fax machine, Josh suggested that I take photos of the prescription and email them. It totally worked.

My beautiful wife has fallen asleep while writing this post. I’ll try and pick it up from here.

The pharmacy was able to get all three compounds mixed and ready within an hour and a half! Their service was absolutely phenomenal.

With this problem solved, Tina was able to come home and get a temporary place set up for Ella. The house is still in disarray, and the Bun’s room still smells of paint, so we’ve set her up in the living room for now.

There remains a ton of unpacking and organizing to do before we’ll truly feel moved in, but it’s nice to be home with our sweet girl.

Praise God for the work He does in our lives every day. Ella Renae is quite the miracle, and her spirit and strength remind us of just how awesome our Lord is.

Thank you Jesus for allowing us to take our girl home again. We pray that you continue to heal her body, and ask that you give us wisdom and discernment in balancing out her medications. You Lord are worthy of our trust. We surrender our beautiful girl back to you so that you may be glorified. We love you Father. Amen.

Yes, the moving trucks are gone and it is officially over…the move. I mean, the house is a disaster and there is a lot of work ahead of us, but it’s over. I can’t believe that we are back in our house.

Kelly spent so much time with Ella this weekend at the hospital. It was a tremendous help to us as we moved our household. She even spent last night at the hospital. That was a wise move considering that we did not finish with the move and retire until 2:15am.

Back to the most important topic, Ella. She looks good clinically and is behaving like she feels well. With 7 weeks of hospitalization under her belt, it is good to see her feeling better. I just hope and pray that this will be the beginning of a season of health prosperity. It would be really nice to have a long break before returning to the hospital for any in-patient stays.

Today, Ella was fed her during her normal feeding times but given 100ccs over an hour via the food pump. She seemed to tolerate that well, so we are going to look at increasing the rate of food over an hour tomorrow. Heck, if she looks good and seems to be feeling well, I might have to try bolus feeding her just to see what happens.

Ella is scheduled for labs in the morning. We’re praying for a good nurse and stable labs. Although she has been running dry, I would like to see if her BUN is different or essentially the same as it has been this past week.

We thank Him for our beautiful baby girl.

Habakkuk 3:2
I have heard all about you, Lord.
I am filled with awe by your amazing works.
In this time of our deep need,
help us again as you did in years gone by.
And in your anger, remember your mercy.